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ME CFS conference in New York 20th November 2013 relating to treatment .

Discussion in 'General ME/CFS News' started by denlander, Sep 13, 2013.

  1. peggy-sue

    peggy-sue

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    Dogs do tend to slobber everywhere....:cautious:

    But what on earth is a massive multinational like mars doing getting its mitts in?
    aimossy likes this.
  2. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    Thank you @justinreilly for your detailed report from the conference! Wish I could have been there in person. This helps:)
    rosie26, justinreilly and leela like this.
  3. JT1024

    JT1024 Senior Member

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    Last edited: Nov 22, 2013
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  4. aimossy

    aimossy Senior Member

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    did they mention anything at the conference about new findings with respect to recent research?
    rosie26 likes this.
  5. snowathlete

    snowathlete

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    I think they own one of the major dog food brands?

    Btw, Thanks for telling us about the conference! the best, most entertaining overview I've read in a long time.

    I'd like to hear more on the specific projects going on too if anyone has info. Last I heard/read was the stuff in the interview I did with Dr Enlander earlier this year but I'm sure there must be more up to date info now.
    aimossy likes this.
  6. Firestormm

    Firestormm Guest

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    Used to be Pedigree (Chum) I believe :)
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  7. citybug

    citybug Senior Member

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    Many of these talks were synergystic, and too fast for me to take notes and look at slides, so some things are merging in my mind as to who said what.. If slides are posted they will have a lot more detail. Would like to hear it all again. I was also effected by the wall to wall carpet.

    I missed the first presentation by Schadt. Mt Sinai and Klimas group are taking multiple points of data after exercise test (Klimas's short 5 min, other 70% of max) and following hours (K), days (Mt) with blood tests. Mt Sinai breaking down blood products to get more points of data, and ones that may be lost in shuffle in whole blood, these are very fine points of chemical detail in both studies. Klimas getting data points by entering other patient data. Both generating tons of data that will be analyzed to show pathway of reactions after exercise and how screwed up our immune systems are, and goes on to effect blood pressure, many things, limbic system. Klimas and Mikovits and Peterson looking at drugs that lower cytokines.

    From Lipkin study there is big difference between patients up to 3 years and long term. How to reset immune system. Different cytokines can be shut down by many existing drugs ( arthritis drugs, diamox (anti-altitude sickeness)(Dr. M) also abx, antidepressant nortryptiline (dr P)

    Dr. Mikovits: Viruses interact with each other and mitochondria, gene regulation. And, whether retrovirus, or gene regulated herv reactivation, or incomplete virus particles, can be quieted most easily by methylation, also quieted in some patients who improved with arvs. When have cytokine signature of individual patients or groups they can tailor treatment to it. (more below)

    Klimas came late, was at Lipkin meeting. I'm sorry she didn't hear Mikovits since spoke on many same topics. Klimas speaks more regular English instead of science terms so a change from previous speakers. She said she wouldn't get into specific IL #s which I wish she had. Had specifics about holes in immune system showing up compared to GWI and healthies, and other details of chemical reaction trail. Looking to find early points in cascade of reactions after exercise, where can turn off before succeeding effects. Klimas has big team of new people poached from other universities. One can look at what virus does inside cell, and also has a data cruncher. NK cell activity decreases post exercise, already have strong marker. Patients killing 20%, GWI kill 7%. NK cells important because first on the scene and control any foreign cells, control tumors, before other parts of immune system activate. She needs a validator of her past study showing cytotoxic T cells broken irrespective of NK cell level. Lymphocytes are 2X activated. activates more virus, not working well, leads to neuropeptide Y which activates sympathetic nerve, and leads to cleaving Rnase-L, I think. Also correlates with severity of illness like NK cell activity.

    I missed beginning of Mikovits. Lipkin said 85% of patients Montoya's samples had retroviral sequences, (but wouldn't call cause in his talk). Owens had paper about murine leukemia virus ,can call xmrv2 (2009) & (2013) env proteins can promote damage possibly to vascular system. Coffin recent study says can recombine precursors of xmrv by few passages in mice. Research on mice is very common and gamma RV shown aerosolized (Zhang), can pass to another tube during research. Not much more to evolve in nature. Was never one virus. A commonly used EBV pos cell line contains RV. Could be retroviruses or genetic herv activation or defective virus that react to the SFFV antibody and cause bad gene expression. Either way can try to quiet viral activity and cytokine response. Their previous research showed a cytokine pattern for those who react to that antibody. (Those went over my head before-but if anyone has links, these seem very important for our own treatment). There are other hi tech ways to look at viruses now. A new channelopathy virus (SIIR SCN4A?, too fast). They all want to interfere as early in the chain as possible. Mikovits: microbial infection, oxidative stress, inflammation (COX 2, NFkB, cytokines increase).

    Patient support of Mikovits conference attendance, of Klimas research so can do pilot programs without waiting couple years for NIH starter grant, and Mt Sinai program initiation by big grant from patient all appreciated.

    Dr Peterson is doing retrospective studies on the antivirals he has found to be effective to see if would pass FDA, evidence based medecine. Drug approval is 8-15 years. Want large number of patients in trial. Instead, he's looking at approved drugs. Ampligen makes the biggest difference to responders who can go back to work. Rituximab 4/15 patients in study had lasting effects, very expensive. Gamma glubulin studies have been short duration. no treatment universal, start slow and low.
    Antivirals particularly effective for less long duration illness. Valcyte first choice, a lot of people react. If not reacting, probably not absorbing. 2nd Cidofovir --brought VO2 max above disability line in retroactive study and raised NK from 13 to 28, and can measure blood levels for toxicity, 12 infusions over 24 weeks. Valtrex if simplex or zoster. Other antiviral info. Also said cytokines can be blocked. Mentioned drug for IL-17. CDC trying to reach bed bound. Lipkin study looking at their spinal fluid samples.


    My thoughts so far. Seems like people are backing off research into causes, unless someone can make a big donation, and looking into treatment instead. (I feel disappointed in that because more people will get sick first,) but there may be more research money from drug companies if existing drugs shown effective. They can get much more molecular data now so the research goes much further. It seems more important than ever for patients to support research. Give a donation to any or all of these groups, and ACT UP to make the illness known and get more funding.
    Last edited: Nov 23, 2013
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  8. aimossy

    aimossy Senior Member

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  9. Helen

    Helen Senior Member

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    Thanks to all of you that have reported from the conference. It is fantastic to be far away and still be able to get information about what researchers and doctors presented.

    Did anyone from Mt Sinai mention their genome study?

    About treatment @citybug , it is very sad that this vaccine couldnĀ“t be manufactured with another preservative than thimerosal/mercury, as quite a few have been helped while beeing treated. I have personal witnesses about its good effect. Please see this thread : Staph vaccine to treat CFS?? I wish this could be sponsored.
    Last edited: Nov 22, 2013
  10. Daffodil

    Daffodil Senior Member

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    wow. such complicated stuff. great report, citybug.
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  11. lansbergen

    lansbergen Senior Member

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    citybug wrote:
    Anybody have more information on that study?
  12. Gijs

    Gijs Senior Member

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    Business as usual. No news as always. It is the same bla bla i hear for more then a decade now. I hope a real breakthrough will come up within 3 years but i don't think that is going to happen in a hundred years... sorry for my skepticism.
  13. peggy-sue

    peggy-sue

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  14. Ember

    Ember Senior Member

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    Dr. Enlander is welcoming research support. I've started a fundraising thread for his ME Chronic Fatigue Association.
    Last edited: Nov 23, 2013
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  15. Gijs

    Gijs Senior Member

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  16. peggy-sue

    peggy-sue

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    It's in some sort of mainstream newspaper.
    That is new.
    (not that I've ever heard of american banking news)
    rosie26 and Iquitos like this.
  17. Firestormm

    Firestormm Guest

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    You are right. The research referred to is still being completed. Enlander might have mentioned how it is going, but I haven't heard anything, neither do I know when the trial is due to end. He is looking at exercise I believe and it has been said it will challenge the PACE Trial. I think the article was rather pre-emptive and poor which is a shame.
    Valentijn likes this.
  18. Gijs

    Gijs Senior Member

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    Maybe they know something we don't know yet. We will see, i hope so!
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  19. Iquitos

    Iquitos Senior Member

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    Yes, and that the reporting is accurate. THAT is new, too! Just the fact that a disease that affects so many people so badly is getting any coverage at all is new.

    You can comment as a guest on the site -- don't have to "register" to do it. I encourage comments so the news source knows it's being read and appreciated.
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  20. Valentijn

    Valentijn Activity Level: 3

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    Agreed, but it's still nice to see a very clear headline with such a useful message. If PACE has taught us anything, it's that most people pay more attention to the headline than they do to the substance.
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